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Congress heeds dying Va. girl's call on research

By FREDERIC J. FROMMER Associated Press

Posted:
03/13/2014 01:46:35 PM CDT

Updated:
03/13/2014 02:34:20 PM CDT

Click photo to enlarge

Mark Miller, left, Ellyn Miller, right, and their son Jake, center, pose at their home in Leesburg, Va., on Wednesday, March 12, 2014. The Senate passed a bill, named for Gabriella, Tuesday that directs $126 million over the coming decade for childhood cancer research.

WASHINGTON—Two weeks before she died from brain cancer last October, tiny 10-year-old Gabriella Miller of Leesburg, Va., delivered a message on YouTube to Congress: "Stop talking and start doing."

This week, Congress passed legislation named after her that directs more spending for pediatric cancer and other childhood disorders. The Gabriella Miller Kids First Research Act directs $126 million for the cause over the next decade, but Congress would have to fund the research in future appropriations bills.

The legislation calls for eliminating taxpayer funding for political conventions and redirecting it to pediatric research at the National Institutes of Health.

Gabriella, who had given speeches and participated in walk-a-thons to raise awareness for childhood cancer, made the two-minute YouTube video last October with The Truth 365, a documentary film and social media campaign that gives a voice to children with cancer.

"I just have to say it: talk is bull----," she said, with the second syllable bleeped out. "We need actions." She then begins to giggle uncontrollably. As of Thursday, the video had been viewed more than 44,000 times on YouTube.

In November, House Majority Leader Eric Cantor, R-Va., and the bill's sponsor, Rep. Gregg Harper, R-Miss., met with Gabriella's parents at the Capitol and asked if they could rename the legislation for her.

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"We were completely and totally surprised when they asked permission to rename the bill in her honor," said Gabriella's mother, Ellyn Miller. "We were not in any way expecting that—at all. And it took me a back for a moment. It was exactly what we wanted to do. "

In December, the House passed the bill, 295-103, with 102 Democrats and only one Republican, Rep. Paul Broun of Georgia, voting against it. Democrats have called for more funding for the NIH, and argued this bill would do little to accomplish that.

Among those voting against the bill was the top Democrat on the House Appropriations Committee, Nita Lowey of New York. In a statement to The Associated Press this week, Lowey said, "The way to increase research and facilitate groundbreaking medical advances is to restore the $700 million NIH is still short as a result of sequestration, not enact a purely symbolic bill."

Cantor has said he will come up with another proposal this year to eliminate "wasteful federal programs and reallocate funds toward lifesaving research at NIH."

Ellyn Miller said that she agreed with opponents who said the bill didn't do enough.

"But you know what? It's a start. You have to start somewhere," she said.

After House passage, Cantor reached out to Virginia Sen. Tim Kaine, a Democrat, to get the bill passed in the Senate, and organized a meeting in January between Kaine and Miller's parents. Both Kaine and the state's other Democratic senator, Mark Warner, got behind the bill, which passed the Senate unanimously this week. The White House said President Barack Obama will sign the bill into law.

Despite the bipartisan vote in the Senate, Majority Leader Harry Reid, D-Nev., said, "It's extremely important that we understand that the NIH is billions of dollars short of being able to maintain the place they've had in the past."

Ellyn Miller recalled how her daughter was initially "freaked out" when she heard she had cancer, but quickly became a forceful advocate.

"And she just was charismatic, and people were surprised when they saw this teeny, tiny little girl, who was 10 but looked like she was five, get up and speak in front of hundreds of people, and get them on their feet," Miller said. "And she would have them laughing one second, and crying the next. She was tremendously powerful."

Prior to Gabriella's death, the family started the Smashing Walnuts Foundation, dedicated to finding a cure to childhood brain cancer.

Gabriella's father, Mark Miller, said they would keep up efforts to get the research funded.

"I suspect once it starts being funded, it will continue to be funded—it won't be much of an issue," he said. "But you never know, so we have to do our part as citizens and advocates. And of course it has our daughter's name attached to it, so that gives us a little bit more incentive to stay involved in the process, and we certainly will."